I was having my morning coffee and catching my morning news when a War Amps ad came on. The ad shows a cute little girl who, due to a birth defect, was born with only one arm and at about age four is using a prosthetic. This little girl and her mother are talking with another family who have gone through the same experience. This is what would be referred to as a poster child moment however it is the kind of poster child ad I don’t really mind because it focuses on peer support. This poster child approach is not uncommon in fund raising since most of us are aware the cute disabled children, like sex, sells. This is pretty standard in the fund raising process.
Over the years I have studied this because I was one of those “cute” poster children. In 1955 I was the March of Dimes poster child and I have used this experience to develop my own Poster Child philosophy. In 1955 there were not many poster children because there were not that many associations or disabilities types. Today there are hundreds of clubs, associations, foundation, service clubs, etc that dedicate time and energy to bring some brightness into the lives of families and children affected by disability.
I was able to go to camp almost every summer at no expense to my parents. Did this do anything to prepare me for life? Not really but it did give me a camping experience that I may not have otherwise had. With that said I also attended a number of scouting camps that had nothing to do with my disability but more to do with the fact that my father was our scout master. I think it is important to note here that in my family, and I have five siblings, I was never treated as disabled. In fact I was expected to be as active in all household activities as any of my siblings.
Today any organization I can think of that represent disabilities or causes have a poster child. It has become good business sense in the non-profit world. Fund raising has become extremely competitive, is heavily based on selling an idea and nothing sells better than a cute child. But like anything in life children grow up and all of a sudden they are no longer “cute children with a disability”. Moving into adulthood is much more complicated for a child with a disability than it is for a non-disabled child. Unfortunately there is very little planned preparation for these kids to make the transition into adulthood.
The transition into adulthood is very different for many of these kids and requires specific planning. Most kids don’t have to think about things like wheelchair (or equipment) maintenance, managing medication (including budgeting for it), and managing attendant care when needed, obtaining employment that will accommodate a disability or accessing the variety of programs out there to assist with independence. I have been involved with too many families where their child with a disability hit eighteen and was immediately put on a disability support program. I have also seen too many cases where the last thing the child receives from their high school prior to graduation was help in filling out their disability benefits program application. In Alberta that program is referred to as AISH.
What is sad is that many of these kids go from a cute poster child to a government supported adult with little or no explanation as to why. They are left scratching their head not knowing what happened. Many of those friends they had in school are moving on with adulthood and a life of independence while the child with the disability is left with community organization vying for their participation in a day program. A day program the organization gets paid for which really relegates the former child with a disability to an adult business product. Without this product these organizations don’t receive funding.
Now I am not saying that there isn’t a need for some of these programs or organizations but I do believe that more transition support should be available to move from being a “cute child with a disability” to an adulthood that maximizes the opportunity for independence. This requires planning, time and thought. It means moving away from the usual “norm referencing” process we embrace to a “criteria referencing” process. We need to support these kids with transition planning that looks at the criteria that needs to be met to help maximize their independence. Maintaining the norm referencing process we are so comfortable with just puts up more barriers for these kids by creating unrealistic expectations. It’s like comparing apples to bananas.
So as we capitalize on their cuteness for fund raising purposes we hit a big deficit when it comes time to transition them into a productive and independent adulthood. We do all we can when they are cute children to ensure a relatively pleasant childhood but then drop the ball when they reach adulthood by trapping them in programs that are married to poverty level subsistence. To me that just isn’t right!
I do know that I grew up with a lot of other kids that had survived polio. What disappoints me is how a number of us went on to live very independent lives while just as many wound up on some government support program. But I also know from personal experience that had I left it up to those around me I could have been one of those on government support.
In closing ask yourself this: will I be as supportive to the idea of independence for an adult with a disability as I am when I send a donation to an organization because of a cute child with a disability?
Juts one man’s opinion.